work – Page 8 – The Tao of Bill

You don’t look sick…conclusion

This series began as a discussion of what it was like, speaking for myself only, to deal with an increasingly visible illness. It has evolved into me telling my story. I have detailed my struggle to not let my illness define me, to avoid the default greeting of “how are you feeling”? Not because I have a problem with people caring enough to ask, but because I don’t want people’s first thought when they see me is, he’s “the sick guy”.

So, to catch up, I managed to avoid the above problem for the most part through “putting on a good face”. While people knew I had something going on, they didn’t see it on me and it basically went away. My wife called it Denial, and I have to admit it may have looked like it, but in actuality, I just didn’t want to think about it. There was a positive to it, there were people that had known me for a while and were not aware of my health issues that were inspired by my attitude. What they didn’t understand is that I am just a hard-headed guy who has never seen the point of feeling bad for myself. Stay busy, stay productive and hope the sun rises tomorrow. My doctor, post-transplant, would tell me that my denial was the best thing that I ever did. I entered the surgery much fitter and stronger than the typical patient. My wife never forgave the doctor for validating the behavior she detested.

Post-transplant I almost put an end to the “how are you feeling” era. I was up walking 2 days after my surgery, not the week that was recommended. I was back at work in 33 days, not the 90 days recommended. I dropped weight and I had color in my face for the first time. I didn’t look sick. For five years I kept it up. People knew that I was feeling good.

One night in 2016 I was serving a dinner at a Masonic function. I prepared a meal for 85 people all by myself. I was in my element, the kitchen. Moving and grooving, flipping pans and slinging some grub was fun for me. While serving the main course I suddenly grew fatigued and my hands cramped into a claw, making any dexterity impossible. I needed help to finish the dinner, people grew concerned. People who didn’t know me pre-transplant, they never saw the sick me. They wanted to know what was the matter. I knew. It was back.

In 2016 I would lose 48% of function in my new kidney. I would experience symptoms that were highly visible. My cramps happened to the point that I couldn’t hide them, my legs were swollen to the point that I could barely walk. I would contract a lung infection in July that would end up hospitalizing me for the entire month. I was out of work and out of options. I applied for disability. It was finally official, I was the sick guy.

By now, the fight was gone. I had hit bottom. That’s when I began this blog. To reap the cathartic, therapeutic benefits of putting my thoughts to paper. I embraced my illness, stopped trying to hide it and find a way to share a bed with it. Now, it is all about accepting that I have a condition that needs to be controlled, embraced and placed front and center. My reward for finally doing this is I have achieved so much peace of mind. Once you are at the very bottom you have nowhere to look but up.

20 years old…” how are you feeling?”. Good
30 years old…” how are you feeling?”. Ok, why do you ask?
40 years old…” how are you feeling?”. I can’t tell you, so I’ll say great
45 years old…” how are you feeling?”. I would love to tell you, but I can’t afford to. I’m ok
52 years old…” how are you feeling””. I’m alive, thanks for asking.

There’s no escaping it anymore. Some days I feel great, other days I have an episode of crippling cramps in front of 5 old ladies while volunteering at the food pantry. Most people I know are aware that I am pursuing a disability claim. I do my best not to look sick otherwise.

The other day I posted a picture on FB of the mountains of snow we have up here for my MA friends. The first person who responded didn’t ask about the snow, instead, she typed…wait for it…

“How are you feeling?”

I replied, “Fine, thanks for asking”.

the Genie in the bottle

You know the story. You’re walking on the beach, you stumble on something in the sand, you look down and you see what appears to be a vase. You unearth it and instinctively know to rub it. Suddenly a wisp of smoke escapes from the uncertainly secured cap. You drop it and POOF, before you stands a Genie.

He offers you 3 wishes. There is a time limit and once a wish is made it can’t be reversed. What do you wish for?

I often toss silly situations like this around in my mind. The what-if is a harmless exercise to entertain different scenarios. Middle-aged guys often joke about harmless stuff like “if I wasn’t married I could probably shag that hot waitress at the Tilted Kilt”. In reality, unless she has “Daddy issues” and you were lucky enough to be wearing his favorite cologne he would likely be rebuffed with great prejudice. The what-if is also dangerous if you are like me and spend a lot of time dwelling on the past. The 3 wishes scenario is a fun one based purely on its implausibility. Considering that it’s already implausible, why don’t I make it more interesting by doing a then and now?

First of all, do I take care of myself first or do I think of others? 20 year old me would jump at the prospect of free wishes and would immediately think of himself and ask for a large sum of money. After all, isn’t life all about money? Cars, electronics, a big house and nice clothes make the man. Even 30 year old me would have bought into that to some degree and 40 years old me would sure want the house if nothing else.

The current me would also think of me first. I have to. Before I can help others I need to secure my own mask. But the current me is not all about money. It took losing everything that I have to take away the allure of the glimmering pile of gold. 25 years of keeping up with the Jones’, and living check to check in jobs that paid well but robbed me of my soul has taught me the concept of enough. I did enough to give the children the childhood they deserved and held on as long as I could. A bankruptcy, a foreclosure and most of my kidney function later I am embracing enough. Maintaining wealth is too much work. I want a house with lots of wood and animals lying on the many sofas with sunlight streaming in. I want a nice truck that will tow a boat and a couple of snowmobiles. Enough in the bank to not worry about money anymore, but not enough to consume me.

Once offered the second wish, the former me would request Time. Time to work, time to drink after, time to party and not need sleep. A 36 hour day. He had places to go, people to meet and booze to drink. If it was possible to wish to never need sleep, he would have wished for that.

The current me would also ask for time. Not to party, not to drink, not to work. I’ve done that. I want lost time. The time that I spent working late for ungrateful assholes that dangled the carrot of career advancement in front of my nose. The time that I spent stuck in traffic on the way home. The time that I spent on my ass with swollen legs, cramping, and fatigue, drinking beer and watching television. Instead I want all that time back in the form of bedtime stories, tossing the football in the yard, Saturday morning Soccer games, family dinners that I never made it home for. Time spent patiently listening to the rambling stories of an excited child glad to see his/her father. Time to recognize the signs that my wife was struggling and that I was losing her. If possible I want to go back in time, but that’s truly a fantasy.

Now comes the third wish. I know the younger me still had a heart for those around him. He would broadly wish for world peace. He was a good, if not misguided soul. He tried to hide it for many years but for those few that he showed his true self to, he cared.

The current me would also make a wish for the betterment of others. As my third wish I would ask for the validation of Karma, that there be a bus dedicated to it and that I get to be the driver. I would love to personally ensure that all of the good people that put such positive energy into the universe receive it back tenfold. That the kind, the generous, the selfless and the humble are rewarded. And as for the killers, the liars, the cheaters and the greedy…well that’s why the Karma bus has reverse. I need to know, if only for one day that there is some justice in the world.

It’s a nice fantasy, but I know that no matter how many times I walk on the beach barefoot there is 100% chance that I will step on a stingray or HIV infected needle before I do a bottle.

Still, it’a cool to think about.

You don’t look sick…part 3

Revealing to my wife and family that I needed a kidney transplant was a turning point. My children were confused and upset. I told them everything would be fine. My wife painted a much more grim picture. I was furious with her for being so negative, at one point during an unfortunate argument she blurted out “it’s ok kids side with him he’s going to die and you’ll be stuck with me”. It was a brutal comment and hard to bounce back from. I explained to the kids that the best case scenario was a transplant, the worst would be dialysis. Not ideal, but still alive. I kept to myself the attitude that dialysis is the WORST option, giving me zero quality of life. It was a stressful time, only being compounded by the weight of mind-boggling debt and pending foreclosure. Which is historically great for blood pressure.

The backlash on me was partially deserved. By minimizing my condition I did help myself cope, but I alienated my support network. By avoiding being doted on and being treated differently, and most importantly having my family worry about me, I forced them to come to grips with something in a short amount of time, that I have had most of my adult life to deal with…that I may lead a short life. But at that point, I still couldn’t tell people how I was feeling.

At work I couldn’t escape the attention, it was a big story. In late 2009 I was hospitalized for a serious infection that was renal-related. My manager came to visit me on a Saturday with a stack of magazines for me. He said, “looks like you’re going to need a donor soon, huh?” I nodded in agreement. “What if I told you that we might have one? Deb approached me yesterday and wants to be tested”.

I was of course thrilled. She would prove to be a match and, well you can guess the rest. The company made a story out of it. The local CBS affiliate station came to do an in-office interview with Deb and I. For weeks, complete strangers would approach me and say “Hey I saw you on the News! How are you feeling?” People who knew me at the auction and other areas of my life would say “Hey, I saw you on the news. I never knew. You don’t look sick”. Heavy sigh…there was no escaping it now.

After the transplant, it was the new normal. I am blessed to have so many people care about me. The outpouring of support was amazing from friends, family, social media and company connections. My company threw a huge fundraiser for me, everyone knew my story. It truly renewed my faith in people. But post-transplant I was riding a wave, I felt great and I wanted to put 15 plus years of feeling like shit warmed over behind me. I worked out, I hiked, I bought a bike and then a mountain bike. I found a group on Facebook of local mountain bikers and I showed up. I made a bunch of great friends. One day, after a particularly grueling ride I peeled my sweat-soaked shirt off to change into a dry one and there was my enormous scar for all to see. One guy inquired about it and I gave him the brief breakdown. “Hey, I saw you on the news. That’s quite a story. You look great man!” Now that’s what I was going for.

Now let me refocus for a moment. This series is not about being happy or glad or grateful if people ask you how you are. It is about being known by your illness. When your illness defines you. When people think of how much it sucks to be sick…they think of you.

So when I constantly reference the times when people say “You don’t look sick” or ask “How are you feeling” it puts a very particular set of reactions into place. So far in this series, I am describing the birth of Superman as a coping mechanism. As opposed to the earlier-in-life Superman that tried to save the day and fix everything. He was born because I simply couldn’t afford to look sick and I could never actually tell anyone how I actually felt.

My family relied on me. I needed to be the Dad and husband I promised to be. I needed to be strong. So I covered it up, in a way I denied my illness. For them and for myself. When I was really sick, I had to say no to a 10-year old and a 9-year old who asked their Dad to play football in the front yard with them. I couldn’t do it. I couldn’t get off of the sofa. The look on their faces haunted me. After that, I forced myself to do it or I found a way to avoid it. They didn’t need to know so I didn’t tell them.

With my employer and co-workers I couldn’t answer the “How are you feeling?” question without committing career suicide. It may be against the law to discriminate in the workplace against a person with illness but it doesn’t offer much advancement. I had a huge job that other people wanted and a salary that I needed to maintain. So if my Manager said “How are you today?” there was no reason to give it a logical progression to “How are you feeling?”

I lied, I denied. I feel great thank you. I don’t look sick because that’s the point. It’s a whole lot safer than answering like,

“Well thank you for asking. This morning I barely made it to work on time because I was up all night with spasms that no doctor can diagnose. I threw up in the shower this morning and I am wearing a pair of shoes 2 sizes larger than normal because my feet are so swollen I can’t get the others on my feet. I am really fatigued right now for no reason and I am hardly in the mood for your fucking bullshit but here I am…AREN’T YOU GLAD YOU ASKED?”

to be continued

lofty standards

I am a quirky guy, that’s as nice as I can put it. I have certain expectations out of life. In addition to the sun rising each day, I expect electronics to work. I expect passwords to be accepted 2 times in a row. And I expect people to have an acceptable level of intellect and courtesy. I have lofty standards in some categories, others I have come to accept that we’re now grading on a curve.

The areas that I have learned to look the other way in are how people dress in public, personal hygiene, manners, tolerance, acceptance, lack of respect for personal space, attention spans, lack of respect for elders and an abhorrent lack of knowledge in civics and history.

The areas that I continue to have lofty standards in are respectful discourse, eye contact, professionalism in the workplace and doing your job well. As a manager of large staffs in several fields, I know when a person is good at their job. When I encounter someone, ranging from a clerk at a 7-11, a food server to a bank teller, if they have an attitude problem I am severely tempted to tell them to just quit already and make room for someone who gives a fuck. See, that’s my minimum requirement in life…give a fuck.

As a former sales professional, I am highly critical of those in sales. Particularly automotive sales. I did it and was damn good at it. Thorough, courteous and knowledgeable, I knew how to take care of my customer. Consequently I expect the same type of experience every 5 years or so when I buy a car.

This week my Mom got the itch to get a new SUV. She has had hers 5 years and she never keeps one longer than 5 years. A local dealership sent a notice about a recall, she reviewed it and asked me if I would go with her when she dropped hers off, in case she saw something she likes.

We saw a very nice one in a funky blue exterior, black gut and loaded. We asked for a salesperson to show it to us. Quite the opposite of the usual experience of being hounded when you first walk in, they had to find someone to help us. We were introduced to a nice guy, about my age. As he attempted to start the car he found it to be dead. Considering that is was 11 degrees with 30 mph winds it wasn’t alarming. He escorted us inside, jumped it and joined us inside as it warmed up. In conversation, as we made small talk as the car warmed up, I tossed it out there that I have been in “the biz” for over 2 decades. This serves to put a guy on notice that there will be no shenanigans today. He was pickin’ up what I was throwin’ down.

We went out to the now warm car and he asked us to get in. My mom got in the driver seat and he began to attempt to wow her with the center console. The one that wasn’t working. He was a little flustered but we got past it. The Nav screen, audio display and bluetooth set up was down but I assured my mother that I knew what it looked like and it’s very impressive. The salesperson was grateful for my save, and we drove it. Long story short, she loved it.

We went inside and asked to see some numbers. As he made small talk and drew up a proposal I played with my phone. He may have thought I was on Facebook but I was going to be his worst nightmare. I was running market reports on her trade and regional cost analyses on the new vehicle to see what others are paying. I knew there was 12% markup in domestics and quietly showed my mother what I came up with. Surprisingly they only came up 1000 more total than I wanted to pay. We got what I wanted. Easy, great deal, nice people and a good experience overall. We agreed to pick it up Monday night.

Last night was as cold as Friday was. But the car was ready, had a new battery, clean and warm. With a still-broken center console screen. Oooops. SMH. My mother was annoyed, the salesperson was flustered. He screwed up and he knew it. I asked what they were going to do and he asked if we could bring it in the next day (today). I told my mom that I would drop her off at work, bring it for her and wait for the work to be completed.

I did this as planned, waited 3 hours for them to tell me that it needed a part that they didn’t have that needed to be ordered. I told the salesperson that my mother wasn’t happy. He didn’t say anything. Here’s where I got annoyed. I said, “Really, that’s your answer? Do I have to spell it out for you?” He didn’t know what I meant. “What are you going to do for her because we’re going to be getting a little survey soon asking how you did. Do you feel me?” Crickets.

Finally, I spelled it out for him. I want you to do something for her! By the time I was done we had a promise of the first service free, a loaner when I drop it off on Friday, a full recon and a full tank of gas. Of course I had to spell it out for him with crayons and colored construction paper.

It’s difficult holding people to your own standards. It’s even ok to not be that adept at catching the sarcasm. It’s another altogether to not recognize that someone needs something and you need to give it. As a consumer I deserve it and as a person I expect it. Unfortunately, common sense is a plant that doesn’t grow in everyone’s garden.

Since when is knowing your shit a liability?

You don’t look sick…part 2

“How are you feeling?”

I ended the first installment by recalling my brief bout with Testicular Cancer in the late 90’s. It was a formative moment. During my recovery, albeit a short one, I did some serious soul-searching and eventually re-evaluated my entire life.

I decided to explore the job market outside of my little comfort zone. I envisioned all of the upcoming moments with the children that I would miss due to my schedule. The restaurant life was indeed getting old, my back and legs were my livelihood and the benefits were abysmal. When I was forced to take a weeks vacation to recover from Cancer surgery it became painfully obvious that I needed a job using my mind and my degree that also had decent benefits. While rehabbing, I applied for and eventually achieved the job that would be the stepping stone to the best job of my life.

I also realized that this was my second real brush with my mortality. If you have been following my story, you know that I have kidney disease. I have never mentioned my motorcycle accident.

Just ten years before I was hit by a drunk driver. I was hit on the left side and pushed off of the road. I went off the bike, over the bars into a guardrail. I broke 3 ribs and fractured 4 vertebrae. My only memory of the incident was gasping frantically for breath and blacking out. My next memory was waking in the hospital. I had gone into shock. I spent 3 weeks in the hospital, followed by wearing a back brace for 6 months, and I was unemployed. This is the event that led me to the restaurant. Now 9 years in, I was “Billy one-nut”, still dealing with back issues from crashing my bike, and beginning to experience regular symptoms of my burgeoning kidney disease. It wasn’t debilitating at this point, but it was becoming a part of my daily mindset and not just an “episode” here and there. It would also be the beginning of the “how are you feeling”? phase that we with chronic illness deal with.

First, and I think that I speak for most of us with chronic illness, let me say that I honestly appreciate someone inquiring as to my well-being. It beats the living hell out of the popular greeting of “’Sup?” any day. It shows consideration and familiarity. Speaking only for myself, when people routinely greet me with a “how are you feeling”, it’s official. I’m the sick kid. By my logic, which is admittedly questionable at best, my illness has defined me. I was not going to let that happen. I kept at it at the gym, I (politely) dodged questions about my health, walked upright even when hurting and eventually it went away.

It worked for me. My stubborn, bullheaded nature allowed me to fool my kids, appease my wife and keep my job. The family knew but didn’t dwell on it because I didn’t give them a reason to. My boss didn’t know until it was revealed in 2008 that I would definitely need a transplant.

IGA Nephropathy is a rare kidney disease, and like me it is an unpredictable smartass. It lays dormant for years on end, giving you the illusion that it’s not a big deal and then it pops up, robs you of a huge amount of function and says “remember me”? My esteemed team of physicians had done nothing up to this point other than manage symptoms, for IGA is so unpredictable they really didn’t know what would happen. In 2008, when it was confirmed that I would definitely need a transplant I had to tell my family and my employer.

My wife’s reaction was priceless. True to her personality, the “how does this affect me” gene reared its ugly head and she accused me of deceiving her. I have forgiven her since but I will never forget her response.

“If I knew you were that sick I never would have married you.” Normally a stalwart person, that one stung me. She apologized but it was too late. Her rationale was that I was going to die and leave her a widow with 4 heartbroken children. I reminded her that I had warned her when we began dating that I had an uncertain future health-wise.

My employer was very supportive. In fact, they embraced it. They would prove to be one of the only bright spots of the entire ordeal. The downside…everyone knew what was going on, I was now the sick guy. The day had come where every greeting was the default, dreaded

“How are you feeling?”. Here we go

To be continued…

“you don’t look sick”…part 1

I went to my local hospital yesterday morning for some bloodwork. I have a “standing order” for the same tests monthly to monitor my kidney function, or as I call it the “how much have I lost this month” tests. The laboratory waiting room was small and crowded, I swear the room was built as an afterthought. I checked in, surveyed the room, saw a lot of sniffling people and the germaphobe in me chose to stand in the doorway until called.

When called, I trudged through the sea of inconsiderately outstretched legs, carefully dodging the onslaught of germs that I sensed were targeting me as if I had disrupted a wasp’s nest. After my blood was drawn I was led to the door and the Nurse said, for all the waiting room to hear, “ok now head over to Oncology they’re expecting you”. All eyes were on me. As I again navigated the sea of people standing between the door and my exodus an elderly gentleman softly said to his wife,

“he doesn’t look sick”.

I thought about responding but decided against it. Maybe it was the word “Oncology” that threw him, he didn’t know that my iron infusion was administered in the Oncology lab. After I checked in to the Oncology clinic, I sat down and reflected on a similar incident many years ago.

I was treated for Cancer in 1998 at age 31. At that time, I was the proud, doting father of an 18-month-old little girl and my wife was pregnant with my son. I was working full time at the restaurant at night, my days consisted of playing with my daughter and hitting the gym during her morning nap. I was in great shape, the best of my life. I was training for power at the gym, moving a lot of weight for at least 90 minutes a day. One day I was training legs and I attempted a press of 1300 pounds. It was a lot of weight, the kind that requires a guy on each side of the machine to bail you out if your knees pop off and stick to the ceiling. I completed 3 reps, rolled off of the machine and immediately threw up all over the floor. The pain in my core was excruciating. I called my doctor immediately. After I was examined, my doctor asked what my plans for the afternoon were. I told him I was going to work. “Call in sick,” he said and suggested that I call my wife next. I knew it, Cancer.

That nagging pain in my groin was actually a golf-ball sized tumor. It was my favorite, “Lefty”. “Lefty” had to go, regardless of whether it was benign or malignant. My blood work had already indicated that it was malignant. I was asked if I wanted a prosthetic Lefty, I declined. I was married after all, who is going to see? As an aside, I would like to borrow Mr. Peabody’s time machine right about now.

The surgery was scheduled for 10 agonizing days later. To know that you have something inside that is silently trying to kill you and having to wait 10 days to have it removed is torture. I was incredibly aware of it, as if the creature in Alien was planning its moment to pop out of me and wreak havoc. In the meantime, I went to work and acted like everything was just fine. I told one person what was going on, my boss, because I needed to schedule the time off for surgery. He told some people and sure enough, it got out. People started treating me differently. As the kitchen clown, I was a lightning rod for jokes and abuse. My days were always full of banter, it made the day pass. We were all like that. Now, everyone was being so fucking NICE to me I couldn’t take it. I was now the sick guy. People get like that when they hear the “Big C”. There’s nothing they can do and they don’t know what to say. I let them do their thing and I did mine, I deflected it and moved on.

The surgery was successful. And timely. The words “Just in time” were used in conversation. Now in a specimen jar, Lefty was indeed malignant. I would not need chemo, only a long steady regimen of Radiation therapy to my abdominal region.

The Radiation therapy would prove to be a breeze for me. My Oncologist was noticeably shocked at how well I handled it. He would tell me of how patients had to stop treatment due to fatigue and nausea. I was going to the gym and then work after a mere week after my surgery.

Work would prove to be difficult, but not for the reasons you would expect. My strength wasn’t there but I was able to do my job. If they let me. My co-workers, who normally abused me were offering to help me lift things, giving me easier assignments, asking me if I wanted to leave earlier. The worst thing of all is they were being so nice still. No abuse of any kind. I couldn’t take it so one very hot August night I decided to put end this nice stuff.

We were all sweating, it was 95 outside and we were inside a kitchen with 8 ovens, 4 fryolators and 12 saute stations going full tilt. I was sweaty and miserable and I knew I had to pick my moment. I walked into the back kitchen area during a lull and they were all there. I dropped my apron to the floor dramatically and said, “Jesus, I’m sweating my BALL off here!” They erupted in laughter, the tension instantly disappeared. My buddy Joe looks at me and says “so it’s on?”

“Yes, it’s on. Stop tip toeing around me I hate it!”

The abuse was rampant and apparently retroactive. “Billy one-nut” was born. And I loved it, things were back to normal, finally.

One day soon after, as I was leaving the radiation center, I hugged my dear nurses’ goodbye and walked through the waiting room. As I passed an elderly couple, the husband leaned in to the wife and said: “he doesn’t look sick.” I stopped, turned to him and said’ “that’s the idea”.

To be continued…

The elephant in the room

It’s time to address https://lindaghill.com/2018/01/26/jusjojan-daily-prompt-january-26th-2018/ the 800-pound elephant in my living room. This Superman shit is getting out of hand. It’s a real thing (obviously, it’s the name of my blog), and it’s getting in my way and clouding my judgment.

There is good Superman. Like the time I was driving my daughter’s friend home. She and my youngest were in the back seat, we were in traffic and when the light turned Green the horns started blaring. Cars started going around the lead car and I realized that the car was stalled. My youngest elbowed her friend and said “watch this’ as I opened my door, in traffic, ran over and helped push the disabled car to the side of the road. After I knew the driver was all set for a tow I got back in the car. I asked my daughter what she had meant by her comment and she said: “I knew you would help that car.” I pointed out to her that no one else did and she said, “Dad, it’s a good thing.”

There have been many of those. I won’t apologize for them. Then there is the “bad” Superman that takes on too much and sacrifices his own health in the process. I have been guilty of that as well. Would you believe me if I told you, and I can’t be more honest than I am at this moment, that I really don’t think about what is good for me? I’m not looking for a cookie like some deadbeat Dad on Springer. I really don’t care what happens to me. The only pleasure I get out of life is helping others.

When my health was deteriorating severely pre-transplant I managed to put up a serious fight. To not worry my kids, to keep my job and continue to support my family I pushed myself too far. My boss praised me, my wife chastised me. Bad Superman was born. I like how it worked out. Denial wasn’t just a river in Egypt, it was a great way to get to the end zone. I found mental strength in the absence of physical.

As I came out of the fog of anesthesia post-transplant, my eyes strained to see a doctor hovering above me. He asked me when I had last worked. I asked what day it was. Tuesday night? I responded that I worked until noon the day before. He asked if I knew the criteria for dialysis (which I stubbornly refused to do). I did not. He informed me that I was ten times over the limit for dialysis and he was amazed that I didn’t have a heart attack. That explained a lot but I didn’t really care, I was alive now right? The doctor left the room shaking his head. He wasn’t impressed. He thought I was just an irresponsible jagoff. He was probably right, but again, it worked for me.

On recovery, I was consumed by the need to get back in shape and pay back the gift I had been given. In that order. I worked out like crazy, I even did P90X. My Transplant surgeon said, “Kidney transplant patients don’t do P90X”. I said, “they do now.” Once I felt good, I began to help other people. I volunteered, I led kid’s mountain bike expeditions. I joined the Freemasons to really put a stamp on my commitment to be a better person and help others. I was a better father, friend, coworker and overall person. I tried to be a better husband, but that ship had sailed already. In the midst of this quest for purity of the soul, I got lazy about my medications and I had a rejection episode. A hospital stay and enough prednisone to kill a stampeding Rosie O’Donnell later I was down about 15% kidney function. Bad Superman. Lesson possibly but not likely learned.

Here and now, in the present, I have found a day that I can’t save. I’ve finally found my true Lex Luthor. My wife. Since we agreed to divorce, she has been noticeably depressed. Her best friend, who my wife famously “picked” over me as her confidante and number one, is telling me that something is wrong with her. While highly tempted to tell her, as the anointed yin to her yang, to fix it herself I am instead terribly worried. Her living situation really does suck. She lives with the best friend, the household is a real disaster. Between the lack of privacy, the new and increasingly frequent arguments with each other (which my wife is completely unequipped to handle), and lack of money she really is slipping into a depression. I saw just how bad it was Wednesday night. At my daughter’s 16th birthday of all places.

Instead of a “sweet 16” party she deserves, with a hundred guests fawning over the wonderful, sweet, caring and amazing girl that I would actually die without, we had a small gathering at the aforementioned house of horrors. I hate it there but I gladly drove 2 hours there. I wouldn’t miss it. My 2 oldest were unable to make it and I walked into a true shit show. My wife was livid, she was fighting with her friend and for some reason barely talking to me. I managed to get her alone for a minute and stupidly asked her if she was ok.

“Fucking great, living the dream.”

I fumbled a bit and then told her that I am used to her not being happy, but I’d never seen her depressed. I told her I was worried about her. She told me that there is nothing that I can do.

We tabled it for the moment and went on to celebrate my daughter’s special day. God bless her, she managed to make the most of it. She’s used to being disappointed I suppose. I showed her the blog post I wrote for her the other night (in confidence). She cried, in a good way. In the absence of material things, I made the gesture of words and she appreciated it. When I left, I gave my wife half of the measly earnings I had made this week. She gave me a weak thank you, a half-assed smile and I left.

“There’s nothing you can do” echoed through my head the entire ride home, haunted me in my sleep and was waiting for me when I awoke. The fact is, there is something that I can do. I can go back to work. It is very likely that I will be offered a full-time position in April. If I get a good enough offer, it may be time to cancel the SSDI claim, take care of myself and hope for the best. I would be able to give my wife enough to get a place of her own, or at least make her situation better. I would be doing something, instead of resigning myself to accepting things the way they are. I just have to determine the cost. It could be up to or in excess of the limitations of my body.

I have known my wife for 29 years. Married for almost 23. She raised four amazing children. Despite some notable wrinkles, she has been a good wife for the entire time. I can’t leave her like this. I know I’m not well. but when has that ever stopped me? As a man of integrity, the right way is the only option and I can’t help but feel that I am not doing all that I can.

Is this the true test of my lack of concern for my own well-being? I know that at least one of you out there is going to agree with this…in order to save others, I have to put my own mask on first.

Dammit Superman, what are you going to do now?

dipping a toe in the water

I have been working a bit lately. I missed it. Not being able to work was so challenging on many levels to me. I need to be productive, to feel accomplished at the end of the day. I recently realized, while sitting on the sidelines, that my identity and sense of worth has always been deeply connected to my vocation. Not working was like a partial lobotomy.

It is a good gig for me. It is only a couple of days per week, I pick the days, and it gives me some spending money without affecting my SSDI claim.

After several months up here, with no real routines to adhere to and a lot of time on my derriere it has been surprisingly tiring to perform fairly menial duties. The cramping and spasms that have hindered me throughout my illness have been severe and I am forced to smile through excruciating pain in front of my new co-workers and caused several sleepless, painful nights.

The bigger challenge I face is knowing and minding my place, which is hard for me.

I work for a very nice man that I have known for almost 20 years. Ben now owns 2 finance companies and a lot of real estate, but I knew him when he was just a used car dealer. I walked into his dealership as an auction rep, we briefly talked and he told me he was all set for auctions. As I turned to leave, I noticed a jar on his desk requesting donations for a little girl with Cancer. It was his 3-year old daughter Sophie. I donated a hundred bucks, wished him well and left.

I would get a call later that day. Ben said, “your donation didn’t have anything to do with this, but come by next week and we’ll talk.” We would become associates and friends for many years, culminating in my working for him and a partner in 2016. We never talked about the death of Sophie at 4, of the fundraisers we coordinated to raise money for her, and of his divorce soon after. When his partner laid me off in 2017, he told me to keep my phone on. He called.

I am doing some pretty menial stuff because that’s what he needs. His finance company is growing, his staff is overwhelmed and a lot of people are doing multiple roles. I have already found about 4 different departments to assist. The problem is that these people don’t know who I am or what my background is. If Ben didn’t tell them neither am I. So I was initially viewed skeptically, then looked at funny when I say or do something that reveals my extensive background in this field. So when I mention my challenge in finding and minding my place, I have to constantly check myself and just do what I am asked to do. Which is really difficult for me.

The office is buzzing. They are talking about me. Ben is already asking if I can work more. My prediction https://wordpress.com/read/feeds/24840312/posts/1746149506 is that I will be offered a full-time position soon. Which will be a real dilemma, because I will have to drop my SSDI claim. That is akin to playing Russian Roulette with my future.

I will explain more in my next post…

#what if? installment 1

This is my first installment of what I hope is a series of blogs on the what-ifs of life. Having addressed the topic of “If” in a previous post; “as if”, “if when”, “if only” etc., I realized that there were so many directions I could go.

Once I decided to explore this further, I mulled a bit over where to start. Given my heavy heart today, I will start with

“what if” we never got married?

I saw you yesterday. You look sad. That smile that once lit up a room is nowhere to be seen. Your best friend told me she is worried about you, that you may do something drastic. That’s not your style.

You are stuck on a rough patch. You are largely supporting yourself and our 2 youngest children. Money is tight. I’m not much help. You live with your best friend, the one that you picked over me as your number one many years ago. Despite her generosity in letting you live in her home, and despite your love for her, you have begun to fight with her and you are extremely unhappy. Without the scent of sour grapes on my breath, I ask you; shouldn’t she be the one to talk you off of the ledge? Yet she is calling me to tell me you are not doing well.

This may surprise you, but I never wanted this for you. I hate that you are struggling and I would do anything within my means to make this better for you.

It is bittersweet to think that I actually gave you an out before we began dating. Surely you remember the night we sat in my Mustang, staring at the lights dancing across the pond, just talking. We were about to start dating, openly talking about all of the complexities. I told you that I had personal demons, health issues, and limited earning potential. You didn’t care. You cared so deeply for me, there was so much pressure on me not to hurt you. It was a big step. Simply put, I told you, for your own sake, that I wasn’t good for you. I gave you an out. Do you ever wonder what it would be like if you took it?

Sometimes, when angry at you, I asked myself if anyone else would have married you. That is not to say that it is any great treat to be with me, or that you are not great in many ways. But you are difficult. You have admitted that you are bipolar, yet refuse to seek treatment for it. You are quick to anger, unreasonable and stubborn when you want something, and completely inflexible on some things. It’s fair to wonder how well another man would handle it.

As for me, I was no prize either and not sure I would have ever married. I was broken when we met. Reeling from a breakup, recovering from an accident, on “hiatus” from college and a functional alcoholic. I was stuck in a nowhere job, my vision extended no further than my next day off. Other than the occasional fling with a waitress, I wasn’t dating at all and didn’t want to. If I hadn’t met you for all I know I would still be there. You pushed me to finish school, supported me as I worked full time and carried a full class load. You saw potential in me. You thought I was smart and you believed in me.

Despite your youth, you were a little broken for your age. You had a contemptuous relationship with your mother. She was toxic in her lack of support for you. Despite claiming to have your best interest at heart she criticized all of your choices and no one in your life was ever good enough for you, and let’s face it, for her as well. I swear you married a pizza cook just to get back at her. You still have the same relationship with her today. It has always been a hard thing for me to watch.

Had you married someone else would you have a bigger house? A nicer car? Non-material things like fidelity, passion, honesty, fun, and laughs? We had all of those things once. Having had and lost is surely better than never having at all.

Had I married someone else would I have gone as far in my career? I pushed myself to the top of the heap out of financial necessity. but I still made it much further than I would have ever expected of myself. Or would I still work in the kitchen, stuck in a nowhere job that I didn’t know was nowhere until you pointed it out to me.

I don’t know if you would have had a better life had you not married me. I promised you that I would do the best that I could, but I was never able to assure you that it would be enough. It is of small comfort that I tried.

“What if’s” aside I do know that without our union, the world would be less 4 great children who are destined to do great things. 4 caring, smart, compassionate kids that, like me, are worried about you and want you to pull out of this. Even in divorce, I will never abandon you. Even though you have asked me for nothing in divorce except a promise to help if needed, I will always be there to give you whatever I have to see that you are provided for. “What if’s” aside, we did get married, I did promise to take care of you, and I will always want the best for you.

Not going gently into that good night

https://lindaghill.com/2018/01/18/jusjojan-daily-prompt-january-18th-2018/

I found a part-time job that I can work without affecting my disability claim. It’s manageable, 2 days a week, no stress and it’s something I love.

I got up at 6 today, my new Thursday routine. I leave early and drive down to MA, about 2 1/2 hours of driving, work Thursday and stay at my buddy Jim’s place Thursday night and drive home after work on Friday. It’s been fun so far.

I came down at 6:20 to find my mother in the kitchen. She can’t just sleep in, she needs to see me off with our ritual morning coffee. “You’re looking chipper this morning, don’t tell me you slept well?” (I never do). I admitted that I did feel good. I was tired from a lack of sleep but I was excited. Excited is a look and feel I haven’t worn in a while.

I bid my mom adieu, stepped out into the arctic blast, started the sled, topped off my washer fluid and I was off. I adjusted my seat, charged my phone and adjusted my rear view mirror. I caught a glimpse of my homely mug in the process and instead of my usual grimace, I smiled. I realized at that moment that Mom was right. I was feeling chipper. I’m feeling like the old me. In short,

For those of you that have read my posts before, you have seen that I have struggled with some significant obstacles. I have openly lamented that I don’t have the fight that I used to. My readers will also know that the “Superman” thing is not a glorified ego or a magnified self-image, it is a character trait. I have always wanted to fix everything, have always acted bulletproof and my refusal to let my illness slow me down was the cape to my illness, aka my Lex Luthor. I have been called Superman as an insult by my wife who thought I was in denial. I have been called Superman by a few lovelies who received a good “Rogering” late in the evening to get another one early in the morning before work (man I wish those days) but most importantly I’ve been called Superman by those who knew I was sick but couldn’t tell. Simply put, I refused to be a sick person.

After this past summer, it’s been harder not to be that sick person. I have been symptomatic in so many ways it became like a game show. “What do we have today behind curtain number 1 Johnny? Ooooh tooo bad it’s swollen legs. No walking for you today!” The next day it’s Gout, Ooooh too bad!” Just one thing after another after another, eventually I hung up my cape.

Even my wife, who I perhaps unfairly, consider to be my ultimate detractor had told me that I had to get the “Old me” back. To get the fight back. It wasn’t there. But lately, I think less about feeling lousy and look forward more to feeling good. I wake up and set goals, I tell my Drs. what I can do, not let them tell me what I can’t. I am thinking about the future, regardless of how long it is, not dwelling on today. I am defining the situation before it defines me. I am not the sick guy until the day after they bury me.

I like this feeling. I’m not just raging against the dying of the light. I’m starting a goddamn revolt.

Every man dies. But not every man lives…